The Patient Experience.
In my recent relating of the experience of my partner's sojourn at the 'dark fortress' that passes for our local teaching hospital (sic), I spoke of the 'loss of innocence'. It's a concept that is perhaps a little hard to grasp, but is the factor that is the springboard of the radicalisation of many patients and the birth canal of advocacy groups. It is worthwhile then to examine what drives this and why a significant minority of patients find themselves at loggerheads with Medicine.
Many of us go through life, with little to no contact with Doctors', or if we do it is for simple and easily remedied needs that are adequately fulfilled by the primary care GP. Some, generally with little in the way of understanding of Healthcare, accept what they are given because of the adherence to a thought process that is still (surprisingly) in vogue, that 'Doctor knows best'. Well that used to work for my mother, and over the years to an extent for me too, but once we have a bad experience, some although not all, begin to question the veracity of that paradigm. My friend, the Registrar once said to me that one Doctor who treats a patient badly and causes harm, shames the whole profession and initiates an alienation of that patient to Doctors' often for the rest of that persons life. That is true, and summarises my feelings about the various shortcomings of the care J' received, but it's more complicated than that. In fact the patient versus doctor warfare that has taken place over the years since the NHS came into being can be characterised by the overt coercion, disempowerment, objectification, and devaluation of the patient as their own moral agent.
These problems arise from a lack of courtesy through to actual harms, and inculcate in many an aversion to the profession as a whole, some of whom do not deserve it, except of course to say that they allow it go on with little demur. Keeping patients waiting, for a pre-arranged appointment is the beginning, characterised by the practise of 'over bookng', common in the NHS. This sows in the mind an attitude of contempt; a devaluation of the time of a patient as being worthless and that of the Doctor as precious.
Then there is then the dominance of the Doctor in the relationship, with very little adequate understanding of the anxiety they inculcate within the patient by the (often) overbearing and overcomplicated language they use to describe both conditions, and the protocols invoked for treatment. There is often a failure to impart information about the side effects and dangers attached to many of the treatments advocated and indeed an often patronising stance by the Practitioner that the patient does not understand what is being done and this often diffuses and even negates the the concept of 'informed consent'. This is the stance assumed by many Doctors, that they should not tell the patient too much, so as not to frighten or baffle them, especially if they are women (covert misogyny).
Many treatments even tests, carry a burden of danger that is almost always withheld or 'glossed over'. Radiotherapy, Mammography, HRT treatment, many drug therapies and even anaesthesia is often portrayed as benign and patients who complain are often treated with disdain or even hostility. In truth, most if not all aspects of medicine or surgery carry risks, some serious others less so, and often these are different in some recipients more than others. Many of these protocols are now seen as counter productive, dangerous, and even fatal in some cases, but the patient has often been coerced, covertly or overtly to accede to them. So then domination takes from the patient their autonomy, that essential sense of 'self' that guides and governs most of our actions. Removing this takes away the option that one should always have; not to follow the path advocated because of prospective harm, whether perceived or real, because not accepting a course of treatment is a patients inalienable right. Withholding information of harm can guide a patient down a road that they would have otherwise have not taken. It also breaches the ethical code of Doctors' and that of their (piss poor) governing body, the General Medical Council (GMC).
Most Doctors' hold the view that they generally act in the best interest of patients' and that they are guided by science. They focus upon the good that they do. In doing so they often neglect the harms implicit in the drugs and protocols they champion as efficacious because they view most of these harms can be balanced against the overall good they achieve. They turn a 'blind eye' to iatrogenic (doctor induced) harm because it does not fit with their ideology of acting in the best interest of their patient. This hubristic attitude extends to many areas of Medicine and is part of the self delusion that comes about from power; power over the patient.
The primary example I would cite is that of the practise within Primary Care of the adherence to the Quality Outcomes Framework (QOF). Doctors get paid for fulfilling protocols that generally are political in origin, rather than being steeped in any sort of evidence based medicine, such as the lowering of cholesterol, reductions in blood pressure, avoidance of saturated fat, five portions of fruit and vegetables a day etc. Few if any, have any real belief that they are doing any particular good, and a significant minority are convinced that they are actually contributing to harm. Yet GP's continue to undertake the various tests to prove adherence to these protocols, that are only 'surrogate' markers of disease. These have largely been proven as worthless But they garner fee's for the GP's practise. Can this be called indicative of patient care?
Another example, in Orthopaedics, is the use of the now much criticised metal-on-metal hip implant. Now anyone with engineering knowledge would have immediately spotted the fatal flaw in the concept of such materials in an environment where even with lubrication, which is impossible unless you install a grease nipple on the outside of the hip (and even if you could the grease would be toxic) wear of some quite high order would take place. This is called 'tribology' and is the science of wear. Engineering science seeks to limit this wear by the introduction of an interface between the frictional surfaces called a lubricant which overall slows down wear. An engineer who could introduce to the world, a lubricant that eliminates it completely would be able to write their own paycheck, and it would have many zero's at the end. Yet surgeons continue to utilise this and many other implants, that inevitably wear away, some at alarming rates, and consequently put patients at risk and condemn them to further surgery. Surgery of a significant level of risk and often on multiple occasions sometimes resultant in death. 'Do no harm'?
The harms perpetrated on Diabetics is perhaps the most scandalous of all protocols practised in Primary Care. Many Type 11's abandon the advice they are constantly given, either overtly or covertly, because most aspects of their condition continue to worsen if they adhere to the drugs and diets prescribed. They exemplify, perhaps more than any other cohort in the treatment paradigm of the QOF, the poor standard of science and the dangerous and patently stupid protocols advocated. The worst of these is to advise patients to consume carbohydrate, which turns to glucose in the body in very short order after consumption. Reduction of blood glucose is precisely that which Diabetics have to achieve to be normoglycemic. Why in the name of Hippocrates would you instruct a patient to indulge in that which is to them a 'poison? So you can give them some more of those 'nice' drugs that 'Pharma' says is essential to normoglycemic levels? It is 'wibble' and dangerous 'wibble' at that. And it is more likely than anything else to spawn even worse levels of blood glucose, with the consequent elevation of other symptoms and the need to 'crank up' the volume and number of prescribed drugs.
Doctors and others in health care are often blinded to the harms the patient receives and often disbelieve them because it impinges upon their feeling of self worth; their absolute belief that they act in the best interests of patients, even when they are wrong. Their dominance and hubris is bordering on delusional and they often dismiss patients views because they do not talk the same language Fortunately a significant number of Diabetics are taking control of their own destiny and this is on the increase and the subsequent HbA1c results they are achieving is testimony to the elemental stupidity of the advice they are given. More power to them! They have been radicalised.
Since the beginning of the NHS patients', tired or traumatised by what they or those they love have suffered, have sought pathways to telling their story, seeking redress, a simple apology, or even, on rare occasions, revenge. They have found it impossible; Doctors viewed them as mad or bad. The NHS and the systems and organisations set up to safeguard them, or to allow them to seek redress have been fatally flawed because they are part of the 'establishment' of the State, and thus have a vested interest in preventing or subverting that end. Set up to fail the patient then, already radicalised, becomes even more bitter, more radical, because there seems to be no outlet, no avenue down which to pursue the perfectly reasonable need of righting wrongs or preventing further episodes of harm. They either give up in in disgust, are buried (literally), as are most Doctors major errors, or they enjoin together with others of their kind to form pressure groups.
Some of these have been successful. But some like The Patients Association or Action Against Medical Accidents, have virtually joined the very establishment they were formed to combat. Others such as Diabetes UK, or Heart UK and many others have simply become mouthpieces for the political goals of the Neo-Liberals or worse, the sales promotion teams for 'Big Pharma'. There is in fact no avenue left for the radical patient who seeks justice, candour or redress, other than their own efforts, the rapacious legal sector, or by joining a pressure group that is not part of the 'establishment'. When there are, at conservative estimates, 34,000 deaths and 40,000 serious injuries per year as a result of medical errors (National Patient Safety Agency figures), it is an appalling indictment of our political system that we have no effective means of obtaining anything more than a few weasel words of sorrow when death or serious harm is perpetrated against us the patient. And at some time in most of our lives we will all be given that title.
In writing the forgoing I wish it to be known that I do not 'hate doctors', in fact I admire quite few, but I do hate the power structure they enjoy and the virtual immunity from any ordure in the event of causing serious harm or death. We need a a 'duty of candour ' in the UK and a system of justice that allows it to flourish.
(For anyone wishing to look at the support and pressure group of which I am a member, click on the scales of justice).
This post is dedicated to Robbie, David, Catherine, Stephanie and a legion of others who lost in the gamble of placing their trust in Medicine and the NHS.